A New Chapter (a month late)

A New Chapter

I started this blog post in the car the day we left Texas to move to Georgia.  Things haven’t really calmed down any since we started moving, as you can tell from the long time it’s been between starting this post and finishing it.  We’ve been in Georgia a month already.  I can hardly believe it.  I’m going to leave the rest of the body of the post the same as I had already written it, to convey the emotions that were present the day we moved...

Yesterday, our last Sunday at Rockwall and Brin, and this morning were full of tears and sadness, goodbyes, and disappointment over what should have been different.  Tomorrow is full of the promise of a new beginning, new relationships, and new challenges, as well as some anxiety.  But the drive between Texas and Georgia is a long one, with lots of time for introspection.  

It’s really not until we started to say goodbye that I began to realize how much I’m going to miss my Texas family.  The weeks leading up to our move have been so incredibly full and busy, I’ve hardly had time to think.  Even though all of Luke’s surgeries are over, we still have a very medically complicated child, and coordinating all his new doctors, therapists, and insurance has been pretty stressful.  I will be glad when everything is settled.  I’ve been so focused on making sure things are tied up in Texas and ready for us in Georgia, that I haven’t really had time to feel sad about who we’re leaving behind or anxious about what lies ahead.  Now that moving day is finally here, I’m thankful for a long drive to get my thoughts in order and nail down what exactly I am feeling.  I kind of wish the drive was twice as long so I could take the time to write each person that I will miss from Texas to tell them how much they mean to me.  

Although I was very sad yesterday and this morning, my God has blessed me with a peace that passes understanding.  I am hopeful about the future and reassured by little signs along the way that our family is doing exactly what we are supposed to be doing.  

It is very clear to us that God put us in Terrell five and a half years ago for several reasons.  I believe one reason God put us in Terrell was so that we could be near Dallas for Luke’s medical care.  When God placed our feet on that road, I prayed that he would guide us to each individual doctor, nurse, and therapist that would be perfect to treat Luke and walk with our family.  I believe he answered that prayer in so many ways.  We have met so many incredible people--some who know our God and some who have yet to acknowledge him.  I believe God has and continues to use Luke and our family as his instruments to proclaim his love and mighty power.  

I believe God put us in Terrell because in many ways Rockwall and Brin was the fertile soil that God used to produce a harvest from the kernel of our faith story.  We have heard reports of people in other cities, in other states, and even in other countries who learned of Luke’s story and as a result prayed or trusted Jesus for the first time.  Luke’s precious little life has been a loud proclamation that God is loving, all-powerful, and that he is good all the time.  I am humbled as I think about all the lives God has touched, known and unknown to us, through Luke’s story.  I believe the people connected to Rockwall and Brin were ready to witness God’s power in a very tangible way, and they got to see it through the transformation of a tiny, 5lb 10oz baby boy on the brink of death into a walking, talking, laughing little boy who lives life so furiously as if he wants to catch up on all he missed out on during his first year of life.  

I don’t know what all the reasons are that God lead us to Terrell.  And I only know a few of the reasons he called us to leave Terrell and move to Lawrenceville.  But it is undoubtedly clear that even though leaving the people we love so much is painful, we’re on the right road.  Things have moved so quickly since David first heard at the end of June about a church near Atlanta that was looking for a pulpit minister.  The timing has been so perfect.  Luke had his last open heart surgery in March, and then Sam was born in May.  For the first time since I got pregnant with Luke, we became mobile.  In the time surrounding our interview weekend, we prayed that God would tell us very clearly if Gwinnett would be a good fit for us.  During our visit to Gwinnett, things seemed to start sliding into place.

Right off the bat, David and I were both inspired by the caring, proactive, team-oriented, and vision-driven nature of the leadership at Gwinnett church.  I mean this in the most loving and respectful way possible, but seeing these characteristics in the Gwinnette shepherds renewed our hope in the future of the Church in general, in our ministry specifically, and even began to heal some of the wounds we sustained during our ministry at Rockwall and Brin.  

Every person we met in the congregation seemed to be immediately warm and welcoming.  Gwinnette church has a great number of young families and seems ready to really grow.  Atlanta has one of the top 10 children’s hospitals in the country.  Children’s Hospital of Atlanta has a great neuropsychology program that may be able to help us diagnose and treat specifically the cognitive and behavioral issues we’ve seen in Luke.  F rom what we’ve heard, Gwinnette has great schools to suit Luke’s current educational needs.  Lawrenceville has everything we want in a place to live, including close (but not too close) proximity to Atlanta.  Georgia is so beautiful.  There appears to be good room for me to grow professionally as an MFT.  The distance from Albuquerque and Edmond truly gave us pause, but we decided together that we felt we really wanted to make a permanent home in Lawrenceville should we be offered the position.  

Once we were offered the job, our biggest worries were if we would be able to sell the house, would we be able to pay Luke’s health insurance costs and still maintain his level of care (6 physical, occupational, and feeding therapy sessions each week), and would I be able to get licensed as an MFT in Georgia.  

I’m still working on the details of my MFT licensure.  It looks like I will probably have to be an associate MFT for a year in Georgia before I can apply for professional licensure.  Georgia counts hours a little differently than Texas, and so I’m about 500 hours away from the required amount.  Thankfully, I already have a couple of contacts in the the mental health world who I know will be very willing to help me achieve my professional goals.  I’m not too worried about it.  God has carried my career this far.  I know that if he wants me to be licensed, he’ll take care of the red tape.

The morning after we were offered the position at Gwinnett, I started working on Luke’s medicaid coverage.  We make too much money for Luke to qualify for medicaid based on family income.  But his medical costs far exceed what we as a family can pay, even after primary private medical insurance (for example, his formula costs over $1000 a month and feeding therapy costs about $350 a week--that adds up in a hurry).  Because of Luke’s medical status, he qualifies for medicaid through Texas’ Medically Dependent Child Program.  We spent five dedicated weeks at OCH Baylor and a wild night at a nursing home in Tyler jumping through government hoops to secure his medicaid.  I had no idea how to get Luke qualified for medicaid based on his medical status in Georgia.  I did some searches online and ran into several dead ends.  

Then God gave me the idea to call a social worker in Georgia. Those of you who know me well  know that cold calling and asking someone for help is very, very hard for me.  Well, I drummed up the courage to call the social work department at Scottish Rite hospital in Atlanta:  “My son has never been a patient at your hospital, but we’re moving to Georgia in a month, and I was hoping you could point me in the right direction...”  I was surprised and delighted by how helpful and kind that sweet social worker was:  “Here’s what you need to do...let me email you the packet so you can get started even before you move...”  I even felt comfortable calling her a few weeks later to get a referral for a medical equipment company (DME).  We haven’t secured Luke’s medicaid yet, but we are well on our way to getting it locked down.  

Most of you know that we received an offer on our house only a few hours after we listed it on the market.  We didn’t get quite the price we asked for it, but we got more than the house would appraise for.  We were disappointed that we would have to bring cash to close, but the amount was on the high end of manageable.  Listen.  Because this is the most important thing.  God takes care of you every time.  He loves his kids with an abounding love, and he provides for us more than we need.  Every time.  We closed on our house on Friday.  Friday, Saturday, and Sunday we received cash gifts from our beloved Rockwall and Brin family that completely covered our closing costs.  Completely, with a little left over.  Really.  “They all ate and were satisfied, and the disciples picked up twelve basketfuls of leftovers.” (Mark 6:42-43)

So as the Chisholms turn the page and begin a new chapter that takes place in Lawrenceville, GA, I have some things I want to say to the people we’ve left as well as the people we are about to partner with in ministry.  To my Gwinnette family:  I can’t wait to meet you, get to know you, and love you.  We feel part of your family already.  We are so grateful for and encouraged by all of the wonderful emails, calls, dinner invitations, and Facebook posts welcoming us to Georgia.  I know of a few people back in Texas who are only able to let us go because they’ve seen the outpouring of love you’ve shown to us before we’ve even arrived.  We know that you are going to take good care of us.  We are so excited about joining you and partnering with you as we further God’s kingdom.  I personally am looking forward to developing mature and intimate relationships with the women of this congregation.  It is my prayer that we can always be loving and honest with each other and strengthen each other as iron sharpens iron.  I have much to learn, and I hope that you will be my patient teachers.  

Gwinnette, You don’t know the incredible story of our journey of faith with Luke yet, but you will.  For now you need to know that our experiences in Dallas hospitals are part of the very fabric of our being.  We see everything through the lens of the profound lessons of faith that God has taught us through our suffering.  We are excited to share our story with you.  We love to answer questions.  We love to talk about the amazing things God has done though our lives and through Luke’s life.  Our sincere hope is that our story will edify you, as I believe it has edified many of our other Christian brothers and sisters.  If you wish to read about our story as it unfolded, you can read our blog atwww.prayingforbabyluke.blogspot.com.  

To my Texas family:  I miss you.  I miss the intimacy and the history I share with so many of you, my dear friends.  I think about you often.  I treasure each of you for the different things you contribute to the Body of Christ.  I know that God has lead us to Georgia, but it has been difficult to leave you.  I wish that several of you could come to Gwinnett for awhile and orient our new congregation in all of Luke’s tricks (at least we don’t have an elevator in our new building!).  They’re all doing a pretty good job already though.  ;-)  

Remember that our hope is in our Lord.  God’s family doesn’t shrink, it grows.  That means that even as we turn our faces towards Georgia and to what God is doing here, our hearts are continually joined with yours.  I plan on bringing Luke and Sam for a visit in June while David is in Abilene at school.  Besides visits, I look forward to sitting around the Wedding Feast table and reminiscing with you--and singing God’s praises side by side with you for eternity.  I can’t wait to introduce you all to your Gwinnett brothers and sisters--on this side of heaven or the other side.  

I wish that I had finished this post weeks ago, so that I could tell you before now how much you all mean to me.  We’ve already been here for a month. This post is already over three pages long, so I won’t keep going.  My next post will update you all on what we are doing here, and how Luke’s specifically is doing developmentally and health-wise.  For now, know that he is doing well.  He’s had some trouble behaviorally with the move and accompanying adjustments, but we’re making progress.  I have to remember every day to thank God for his tenacity...it’s a huge reason why he’s alive today, even though it’s a challenge for me on a daily basis.  

We love you and thank you, as always, for your prayers.  We pray that the God of  Peace and Comfort keeps his arms around you.

Blessings,

Rachael, David, Luke, and Sam

Mother of Two

I’ve been wanting to write a post to share with everyone how things have been going since Sam’s birth.  One thing is for sure, I’m going to have to be very intentional about carving out time to work and write now.  My days are inexplicably fuller and more satisfying being the mother of two.  Now that Sam is one month old, I didn’t want more time to go by without writing down my thoughts about becoming this new kind of mother.  

Sam was born on May 20th and arrived at 12:33 pm.  He weighed 7lbs 4oz and was 20.5 in long.  His arrival was just like the last week of my pregnancy - completely uneventful.  Sam was laid back in-utero, and accordingly, his birth was surrounded by absolutely zero hype.  We arrived at the hospital with Luke and both sets of our parents at 10:00.  I got my IV and my epidural and they were wheeling me back to the OR by 11:45.  I was extremely uncomfortable with my epidural while everyone was prepping for surgery.  It seemed like forever before they let David come back to the OR with me.  I started feeling a little better with David by my side.  Then I heard my doctor say, “It’s almost baby time!”  and then in another minute, they were showing me Sam over the curtain.  David left my side then to go help take care of Sam, but I focused on listening to Sam’s crying.  After just a few minutes, David brought over to me a swaddled, very pink, very healthy Samuel Mark Chisholm.  

When Luke was born, he was immediately taken to the NICU, and David followed him.  This time was so much better.  David held Sam and sat next to me for the rest of the surgery.  Then David carried Sam into the recovery room with us and I got to hold him and nurse him as soon as we were settled in recovery.  The next two hours was amazing.  I nursed Sam and held him the whole time.  Every time I looked down at him, the realization that he is mine, he is here, and he is healthy would wash over me anew.  It was so hard for me to let the nurses take him away for his bath and first examination.  I’m not sure how long he was gone, but it seemed like forever.  I might have been a little loopy, but I called the nursery at least twice to remind them that I wanted him brought to me as soon as they were done with him.  It was so hard being apart from him.  They finally brought him to me and we had plenty of cuddle time and nursing time for the rest of the afternoon and evening.  

One thing that was very difficult at the time of Sam’s birth was Luke’s reaction to being at Medical City.  We had been to Med City so many times for blood draws and x-rays in the previous two months that Luke was extremely nervous about being there.  He would not come over to my bed to look at Sam or even hug me.  It was very difficult for him to tolerate being in the hospital room for very long.  It was hard on me to miss my big boy so much during the hospital stay and not to get loves from him when he was there with us.  

Let me write an aside to tell everyone how Luke has been adjusting to becoming a sibling.  At first, Luke ignored Sam.  Every once in awhile he would walk by Sam’s basinet and poke him, or drop a toy in there.  Within the last week or so, Luke’s started to be more interested in his little brother.  Sometimes when he wakes up in the morning, he says “Go see baby Sam.”  Last night he tried to climb in Sam’s basinet with him.  When I wouldn’t let him, he gave Sam a hug and a kiss instead.  The other day I asked Luke who he loves, and he answered “Baby Sam!”  Luke has frequently wanted to share his toys and letters with his little brother.  He’s warming up to Sam, I just have to be very vigilant so he doesn’t crush or hurt him with his enthusiasm.   

Our last night at the hospital was very special to me.  Gigi and Guapo took Luke home early in the afternoon, and my parents had already gone back to Albuquerque.  The hospital room service prepared a special “celebration dinner” for us, which was awesome.  David and I sat in the hospital room and ate dinner together with Sam sleeping in the bassinet a few feet away.  After that, the three of us went for a walk around the floor.  It was nice to process together how wonderful and different the experience with Sam has been.  As much as I missed Luke, it was so nice to have a few nights bonding with Sam and making him a part of our family.  

Thursday morning, we started making preparations to go home from the hospital.  When the time came, it was very surreal.  We packed up our stuff, David installed the car seat, then it was time to go.  I sat in the wheelchair and held Sam while they wheeled me downstairs.  Putting Sam in the car was so low-key and unceremonious.  I could hardly believe they were letting us just walk out the door with that precious bundle and put him in the car, when taking Luke home as a four and a half month old was so complicated and took a week of coordination before hand.  

So many of you reading are probably thinking something like, “Why is she writing all of this?  This is so boring!”  Exactly.  I am so utterly thrilled at the lack of drama in my life right now.  Everything is so much different than it was with Luke’s birth and homecoming.  Sam eats, sleeps, has diapers, cries, spends a little while alert and content, and then we do it all again.  It is such a novel and glorious concept to me to be able to feed him when he’s hungry, hold him when he cries, and not have to wonder where he is or how he’s doing when I wake up in the middle of the night.  

I’m of course tired much of the time, but I’m adjusting well to the decrease in sleep.  I don’t really mind getting up to feed Sam in the middle of the night.  It’s such a sweet time to spend praying and cuddling with my precious baby.  When he cries, I don’t mind because it’s another opportunity to hold and comfort him.  I don’t mind changing 10 diapers a day - it’s much easier to change an infant without tubes and wires coming out of his body every which way.  Not that I minded changing diapers, or performing all of the medical tasks that Luke required as a baby.  It’s just so much more enjoyable this time around. You have to understand that I wasn’t able to do any of those things “normally” with Luke.   I couldn’t hold him without medical personnel in the room until he was 5 months old, and by that time he didn’t want to be held.  I never got to nurse him.  I didn’t hear him cry more than twice until he was 15 months old.  Taking Luke from his crib to the living room took 15 minutes because we had to gather his oxygen, ventilator, pulse ox, and suction machine everywhere he went.  It’s so novel for me to be able to carry Baby Sam with me all over the house.  As you might imagine, I don’t put him down for very long.  Last night I held him while I was brushing my teeth.  If someone at church holds him for more than a couple of minutes, I get antsy.  Maybe I’m warping him.  David says I’m spoiling him because Sam really likes to be held and cries to be picked up when he’s awake in his bouncer or swing for more than 10 minutes.  I’m not apologizing though.  This could very well be my last baby, and I’m snuggling, nursing, holding, and rocking enough for both of my sons.  

I am honored to be Luke’s mom - to perform all the duties that he requires.  I’m so blessed to have Luke in my life, and I will never love him less or say anything to detract from the privilege it is to raise him.  But I LOVE being this kind of mom.  I love the simplicity of nursing Sam when he’s hungry and holding him when he cries.  I love that David and I are solely responsible for him instead of having to rely so heavily on nursing care.  It is so satisfying.  My bliss and contentment still wash over me periodically.  I sometimes still can’t believe that Sam is here, is healthy, and is mine.  

Thank you all so much for your prayers that were answered when God gave us a healthy baby.  As much as I have wanted to have another baby from very soon after Luke was born, God’s timing has, as always, been perfect.  He allowed us to be finished with all of Luke’s surgeries and get his trach out before he gave us Sam. All the better to get to hug and kiss and enjoy him without the stress of hospitals and surgeries and the work of maintaining Luke’s trach.  You might be thinking that everything is so easy and peachy keen now.  It’s not.  There are definitely times when I’m overwhelmed, confused, scared, worried, tired, or grouchy.  Of course it’s not fun when Sam’s fussy at midnight and won’t go to sleep.  But through it all I’m overflowing with joy and thankfulness.  Luke’s illness has definitely given me a unique perspective that allows me to enjoy the simple things in caring for my two boys in a special way.

Thanks everyone for taking the time to read this.  We have so appreciated  those of you who have shared in our joy with your visits and the meals you have brought over the past month (I think I might need the manual to remember how to fire up the stove to cook a meal!).  We always thank you for your prayers and ask for your continued prayers for our family.  We treasure your love and friendship.

Blessings,

Rachael, David, Luke, and Sam

 Holding Sam in recovery, just minutes after he was born.

 Luke loving on his little brother

Our future Green Jacket winner at one month old!

Meet Sam!

Samuel Mark Chisholm

May 20, 2013

12:34 pm

7 lbs 4 oz

20.5 in

Momma and baby are doing great!

Praise God from whom all blessing flow!

Fontan Recovery + Getting Ready for Little Brother

Luke’s third open heart surgery was already over two months ago.  I tried to keep everybody in the loop by short posts on Facebook, but I know some of you aren’t on Facebook, and I haven’t written a post that puts everything together.  And I figure I’d better get it all down for posterity before Mr. Samuel (our second son) makes his appearance into this world.

Luke had his Fontan surgery on March 6th this year.  The day before, we went to Medical City for his pre-op appointment and to consult with his surgeon.  Luke was very excited about getting an X-ray (he’s been saying “X is for X-ray” since he learned his alphabet) until he realized it involved a big scary machine in a cold room where Mamma couldn’t go.  We got through the X-ray and blood work, although both were pretty upsetting for him.  Before all that though, he got to play with the Child Life Specialist in a mock OR.  His favorite part was playing with the labels of the body parts on the picture of the child in the Child Life Room.  He adores anything that has to do with words and letters.  Meeting with Dr. Mendeloff made us feel as confident as we could feel the day before heart surgery, and we knew we would be in great hands.  

The surgery seemed to take a long time, but it probably wasn’t any longer than a usual Fontan, I’m guessing.  Surgery went very smoothly with no problems.  We got to see him briefly in the hallway when they were taking him from the OR to his CHSU room.  Then things really seemed to take forever before we could go back and see him.  When one of our favorite nurses, Mary-Catherine came to get us to go see Luke, we found we had already overcome a major hurdle:  Luke was already off the breathing machine!  After the complications we had extubating him after his heart cath a month before, we were very worried that Luke would have major trouble again getting off the ventilator.  

Weaning him off the nitric oxide and oxygen proved to be our first problem.  The first time we tried to wean him off the nitric, his o2 sats dropped dramatically and his heart rate increased.  Night four post-op was a little scary for us.  It was hurting Luke to cough so much that he refused to do it and wouldn’t clear secretions.  His sats went down into the 30s and the RT had to suction secretions out through his nose, which was pretty traumatic for him.  It certainly wasn’t the worst emergency we’ve had in Luke’s history, but it was a pretty tough night.  We waited another day or so and then tried again, this time much more slowly and with the added help of a drug that does the job of the nitric.  We were successful this time.  

A big challenge for Luke was getting him out of bed and walking around.  He really didn’t feel up to doing anything but laying in bed and watching Super Why.  He cried every time we got him out of bed, but eventually he was walking all the way down the hall multiple times a day.  Once we got him off the Nitric, we were able to take him on wagon rides all over the hospital.  He enjoyed that a lot, and it gave us something to do other than sit around in his room.  

The single biggest problem we had with this surgery, immediately afterward and in the several weeks following was Luke’s fluid balance.  Fluid imbalance can affect Luke’s blood pressure, heart rate, and o2 sats by making it harder to breathe.  A few days after the docs had removed both of Luke’s chest drainage tubes, his x-ray showed that Luke was collecting fluid around his right lung.  At his bedside, they put in a “pig-tail” which is a mini-drainage tube and he immediately drained over 100ml of fluid.  Things started happening very quickly then.  The day after they put in his pig-tail, it stopped yielding fluid, so they took it out.  They weaned him completely off of supplemental oxygen in one morning.  That afternoon we were able to move him out of ICU to the regular patient floor.  

Luke’s labs were not good the next morning.  His BUN (a number that measures kidney function) was very high.  This was caused by being overly “dry” on his body’s fluid balance.  Dr. Kao told us that we would hold his diuretics and add water and Pediasure to his daily intake, but we wouldn’t be able to go home until Luke’s BUN was in a more acceptable range.  Luke was not sleeping very well at all the whole time he was in the hospital.  He would wake up every 15-90 minutes and be incredibly grouchy.  Consequently, both David and I were also sleep deprived.  We were sorely disappointed in Luke’s BUN because we desperately wanted to take him home.  Dr. Kao said that taking him home with a PICC line and bringing him back every day to draw labs was not an option.  So we settled in for a few days.  Thankfully, David’s mom stayed with us the whole time, so we had some relief.  

After a lot of prayer from us and all of you, we found out on March 18 that Luke’s BUN had decreased to a much more normal number.  It still wasn’t “normal,” but it was at a level acceptable enough to take him home.  It was such a relief to all be under our own roof again.  

Luke’s recovery seemed so slow to me.  We also had quite a bit of back and forth--getting better, then getting worse again.  It was all fluid related.  We got home on a Monday and things seemed to be improving, although he still wasn’t sleeping well, waking up at least every two hours.  By Friday, Luke’s breathing was really labored and fast and his sats were lower.  We took him to Medical City Friday morning for an X-ray, then we saw one of his pulmonologists (Dr. Gelfand) and Dr. Kao (cardiologist) immediately Dr. Gelfand talked to her.  Dr. Gelfand said his x-ray didn’t look great.  Dr. Kao sent us to get labs drawn to find out what was going on with his fluid levels.  We were afraid that Luke would have to be admitted to the hospital, but we ended up going home and putting Luke back on oral Lasix (diuretic) and prednisone (steroid) to help him breathe better.  Things started to improve.  

That Saturday night though, we had another adventure.  David discovered at bath time that Luke’s scrotum was very swollen.  This was somewhat alarming, but we weren’t really sure which doctor to call.  David ended up calling the pediatrician’s office and the nurse on call told us to take him to the ER.  We weren’t expecting that, but we packed up and got to Medical City about 9:00.  It was definitely not the longest stay in the ER we’ve had, but exhausting all the same.  At the end of it, the ER doc diagnosed Luke with something called Acute Hydrocele.  He suggested we consult with a general surgeon on Monday to see if he would need surgery to correct it.  David and I were completely frustrated at the prospect of Luke undergoing yet another surgery.  

Sunday, Luke’s problem was better, and we decided that I would talk to Dr. Kao before I called the general surgeon.  Dr. Kao said that she suspected that since he’s never had this problem before, it was probably due to the fluid imbalance and we should wait to see if it resolved or recurred before we called the general surgeon.  It did happen one more time within the next couple of days, but it hasn’t happened since then, so we don’t feel like we need to do anything about it unless the problem returns.  

Over the next several weeks, we continued to have fluid problems.  On Lasix, Luke’s BUN would get really high, but when we would hold it, Luke would become very swollen.  Instead of accumulating in his chest, the fluid started accumulating in his legs and feet.  It got so bad that it got very painful for Luke to walk around, or even for us to touch his legs or feet gently.  This made things like getting Luke dressed and ready for the day or getting him in and out of a shopping cart extremely difficult.  Luke would scream anytime his feet touched the floor or I had to hold onto his legs to change his diaper.  It really was hard carrying around a 36 lb boy on sternal precautions (can’t lift him by his arms) while I was more than 30 weeks pregnant.  But God gave me grace for each moment and we got through it.  

So we were in a bind:  Luke needed Lasix to get the fluid off so he could walk without tremendous pain.  But every time we gave him Lasix, his BUN would get worse.  And he still wasn’t sleeping well.  Finally, we seemed to find a cocktail that started moving us in the right direction:  Lasix every other day, lots of walking and tricycle riding (in spite of his pain) to work out the fluid in his legs and feet, and a healthy dose of Melatonin at bedtime to help him sleep.  Luke started sleeping better, which helped him to be less grouchy during the day and more amenable to walking.  The every other day Lasix helped get the fluid off slowly enough to keep his BUN going in the right direction, although it was very slow progress.  Finally, toward the end of April, seven weeks after surgery, we got a call from Dr. Kao who said that his latest labs looked “beautiful.”  It was almost like he flipped a switch.  The difference between that Sunday and Monday was night and day.  He visibly felt a lot better and had a lot more energy.  Walking didn’t seem to bother him nearly as badly.  

Now Luke is back to his old self.  He’s sleeping through the night, without the help of Melatonin, with very occasional and brief waking in the night.  He’s walking all over the place and regaining his skills in Physical/Occupational/Feeding therapies throughout the week.  Last week we hit a major milestone in our family’s life:  we weaned off of home health nursing.  Our nurse’s last shift was last Thursday, and we’re not looking back.  I was nervous that I would regret dismissing our nursing, but it feels so good to have our home all to ourselves for the first time in nearly four years.  Luke misses his three nurses every day, but we are so excited that we get to be a “normal” family finally.  

We visited Dr. Kao this past week.  She is thrilled at his progress.  She reduced his Lasix to every other day, and we’ll probably end up discontinuing it very soon.  We haven’t had to draw Luke’s labs since April 22.  He’s been feeling so well that we haven’t needed to wonder or worry about what his numbers might be. Surgery and recovery has definitely made a lasting impact on Luke, though.  Many times when we get in the car, Luke says “no ouch!” meaning that he thinks I’m taking him to get his labs drawn.  Every single time he says this, it breaks my heart remembering how scary all of those draws must have been for him.  I hate that it took so long to get his fluid in balance, but I’m very glad we have the “real Luke” back.  

Luke’s full recovery could not have come at a better time (well, I would have taken it a little sooner).  Luke’s little brother is coming tomorrow, so we’ve had a couple of weeks to settle into a rhythm without home health nursing.  It’s hard to tell how much Luke understands about getting a new brother.  He knows that his name is Sam, that he’s in my “belly button”, and that he’s coming tomorrow.  Still, this is going to rock his little world.  

We’re so thankful for everyone’s prayers through Luke’s surgery and recovery.  It’s been such a long road, but we’re so grateful that all the major surgeries are behind us now.  We continue to ask for your prayers as we bring Sam home in just a few days and begin to make the adjustment from a family of three with a sick little boy to a family of four with two healthy energetic boys.  I’m so excited about our future, and so thrilled that you all have and will continue to be on this journey with us.  

Blessings,

Rachael, David, Luke, and Sam (soon)

Happy FOURTH Birthday Luke!

Four years ago was an incredible, incredible day full of joy, worry, anxiety, and brimming over with blessings. Our heart hero Luke was born at 6:06pm. He was immediately whisked away to the NICU to begin his brave battle. Four years, three heart surgeries, two airway reconstructions, and countless other procedures, pokes, tests, and days of worry later, Luke is thriving. We are so grateful for everyone's support and prayers who have gotten our family to this point! Happy birthday precious boy!

Speaking!

Monday

Luke's lab results came back as "Beautiful!" No plans for repeating labs at this time! We'll see Dr. Kao again in three weeks. Luke was a trooper getting his blood drawn today, and he's been walking all over the place. We even spent 45 min at the park on the way home. Oh, and his rash from yesterday is almost completely gone. So thankful we're continuing in the right direction.

Monday

Taking Luke up to Med City again this morning for labs. First attempt to get him up was met with crying and desatting. :( I'm so tired of torturing this kid.

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I feel like a terrible mom: I told Luke when we got out of the car at Medical City that we were going to get an "ouch" (needle stick), but then we would go straight home and ride the tricycle. I was trying to prepare him so he wouldn't be so scared, but it made his anxiety way worse the whole time we were getting the order and checking in to the hospital. Then after it was over on the way home, he kept saying "No ouch!" and I told him, "No more ouches today! You're all done!"
Then we get all the way back home and are riding the tricycle when I get a call from Dr. Kao's office saying that something was wrong with the specimen, so we need to go back up and do a repeat. I'm just so tired of hurting him. I'm so emotional right now!

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Back from trip #2 to Medical City. Luke's BUN is headed in the right direction, but still very high (80 when 30s is acceptable). We're keeping him off of diuretics and repeating labs at the end of the week.

Saturday

After almost three whole days off of diuretics, Luke's looking just a little puffy, but he's been having really good diapers. Keeping our fingers crossed, we haven't had any emergencies or big concerns so far this weekend. We pray that this continues and that his BUN and other numbers look much closer to normal on Monday.

Thursday

Dr. Kao called back with Luke's latest lab results. She didn't give me the exact numbers, but she said things are not worse, but they are not better either. :( Soooo... We're holding all diuretics for the weekend and repeating labs again Monday. Just praying Luke doesn't start retaining fluid again so that we have a mess of a different kind on our hands again.

Monday

Labs today showed Luke's BUN is 110. We were not allowed to go home from the hospital when it was still in the 70s, so I know 110 is sky-high. Dr. Kao is letting Luke stay home while we figure this out. We're decreasing diuretics and repeating Labs Thursday. Luke is starting to get anxious now when we even go in the room. He's normally so brave, so him throwing fits over getting his EKG and blood pressure is really tough. I wanted to take him to the arboretum to play on this gorgeous day afterward to brighten his mood, but he just didn't have the energy. He was crying for his bed by the time we got to Forney. I'm so over heart surgery recovery. I just want my little boy back. :(

Monday

Luke is really starting to improve for the most part. He's breathing easier and quieter. His sats are starting to run closer to mid 80%s instead of mid 70%. Heart rate is getting back to his before-surgery baseline. He's sleeping better, but still needs help turning over in the night. I'm so glad we're getting nursing 5 nights a week until he's sleeping through the night. We're still dealing with balancing his fluid. Dr. Kao's office said that the labs we did today looked "okay." We are adding another medication and repeating labs Friday or Monday. I'm a little surprised at how slow this recovery process is, but I'm glad we're headed in the right direction finally.

Saturday

Four or five snatches of sleep at home are better than no sleep at the hospital, even though it wasn't a great night. Luke desatted a couple of times during the night and his breathing was still ragged, but I think it's improving slowly. Luke is sleeping a few hours at a time and his periods of wakefulness are getting shorter for the most part. It was our first night of recovery without a nurse, and I'd say we did pretty well. I will look forward to our nursing returning Monday night though!

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Luke is so much closer to his regular self today. We've seen lots of smiles, and he's spent more time playing on the floor than laying on the couch. He was even up for family pictures this afternoon. Praying for a restful night with easy breathing. We're planning on taking him to church tomorrow. Hopefully the Lasix and Prednisone do the trick. His breathing seems to be better, but I'm still anxious for labs on Monday.

Friday

Luke's breathing turned labored, rapid, and shallow yesterday evening. We're at the hospital now about to get a chest Xray to see if there's anymore fluid building up over his heart and lungs. Praying we can get this resolved quickly and easily.

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Looks like Luke has a fluid volume issue. We had to do another blood draw and Xray to determine the best course of action. We may have to admit him later to give him some IV fluids (albumin) or we may have to put him back on Lasix (diuretic). For now we're taking Luke home and waiting for Dr. Kao to call us with blood work results.

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Heard back from Dr. Kao. She's putting Luke back on oral lasix (not admitting him to the hospital, yay!). Luke's pulmonologist also prescribed him some prednisone to help him breathe better. We'll work on his problems at home through the weekend, and have more labs done on Monday.

Tuesday

We hoped that simply getting Luke home to his own bed would resolve his sleeping issues. Unfortunately, that isn't true. He still woke up several times throughout the night, with his longest sleeping stretch being two hours. Thankfully we had Luke's home health nurse by his side every moment to help him through the night so David and I could get some much needed rest. I'm so frustrated and discouraged that he can't get more solid sleep than this! It is so pitiful that he will repeatedly say, "Help!" throughout the night, but he can't express what he wants or needs beyond that, and for the life of me I can't figure out how to make him more comfortable. This mamma just wants to make the hurt go away with hugs and kisses. I think heart surgery is just too complex for that!

Monday

Great job prayer warriors! Luke's BUN is 55. Not perfect, but decreased enough to take him home today! I will bring him back to Med City Thursday or Friday to redraw labs to make sure we're still in a good range with electrolytes. God is good all the time. We thank you for your very loving and specific prayers over the past many days and for the many days in the future. We will be so glad to be home!

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We can finally say the word: Home! We are in the car, officially leaving the hospital. Luke says: "Luke's going bye bye!"

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So happy to be HOME!

Sunday

Saw Dr. Kao late this morning. Luke's o2 sats are better, and his x-ray looks great. However, his BUN (measure of kidney function) is still quite high. He's in the 70s and needs to be in the 30s-40s. This is the only thing that is keeping us from taking Luke home. So we are holding his Lasix (diuretic) again today, increasing his fluids a bit and hoping for better numbers in the morning. Please join us in praying specifically for his BUN to be low enough in the morning to take him home! God is faithful, and numbers are not hard for him. He is able!

Saturday

David told me that he and Luke had a pretty rough night. Not a lot of sleeping, and some de-satting into the 60%s and 50%s. Now ranging in the low 70%s-low 80%s. So far quite unimpressed with the care on the inpatient floor. The nurses, Lord bless them, seem bewildered about his sats and his cardiac status in general. Anxious to get his x-ray and have it read. I think the nurse practitioner from CHSU rounds down here, so maybe we can talk to her and see if we need to move back to the unit. I can't take this baby home with sats in the low 70%s.

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Feeling much better after talking to the nurse practitioner from the CHSU. She told us that sats between 70% and 80% with occasional desats into the 60%s when he's mad are perfectly acceptable. Luke has been satting high 70%s to mid 80%s the last few hours. His x-ray and labs looks great. She said we are certainly welcome to stay in the hospital another night, but she feels confident sending him home today. We feel he will rest and recover much better at home where maybe he can get some solid sleep. We will check in with Dr. Kao when she rounds sometime today (hopefully sooner rather than later), then we should be headed home. So relieved, but still somewhat anxious. I really don't want to get him home and then have to turn around and bring him back. We still really need your prayers for the days ahead.

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From David:

We are definitely staying here in the hospital for at least another day. Cardiology wants to make sure his fluids/labs are all in good balance and they want to see another chest x-ray in the morning. Hopefully we will have a good night tonight and get to go home in the morning.

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Just saw Dr. Kao. She said that Luke's BUN is a little high and potassium is a little low. She thinks he's a little dehydrated. We will stay another night and redraw labs in the morning after holding his Lasix and giving him a little more fluid for the rest of the day. I'm not looking forward to another night on the floor, but we definitely DO NOT want to take him home and then have his electrolytes to get out of whack. We need to get his fluid levels in balance. So, another day...maybe home Sunday.

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Luke finally drops off, so I get to lay down on this unbelievably uncomfortable pull-out hospital couch, then the baby starts moving. I guess I'd better get used to one kid or the other keeping me awake!

Friday

Look! No oxygen!

Things have happened very quickly today. I went back to the hotel to take a nap after staying with Luke last night. When I got back, they had completely weaned Luke off of oxygen and taken off his nasal cannula. His new chest drainage tube stopped yielding, and his X-ray this morning looked crystal clear, so they took out the tube this afternoon. Once it was out, they started making plans for us to move down to the regular patient floor tomorrow. Then a bed was ready this afternoon, and Dr. Kao gave the thumbs up for us to move today. We took Luke for a wagon ride and found all our stuff moved out when we came back. So now we're on the regular patient floor. If his X-ray and labs all look good tomorrow morning, we're going to push to take him home tomorrow. Soooooo ready to go home, but DON'T TELL THE BABY! (We're still a little superstitious.)
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Approx 10 pm

Luke's sats were running a little low (low to mid 70%s) when I left tonight. Don't really feel confident about being on the floor and not in CHSU with that going on. Please pray that Luke will continue to get better and not worse so we can go home tomorrow or Sunday.

Thursday

Approx 9:45 am

In rounds this morning, the docs told us that while the fluid around Luke's heart is improving, the fluid around his right lung is getting worse, even with increased diuretics. Also, the numbers indicating kidney function (Creatanin and BUN) are also declining. This morning they will be putting in a small drainage tube to drain off the fluid. This is a bedside procedure and shouldn't be painful with the local anesthetic and sedation they will use.
Additionally, Luke is still not sleeping for much more than an about an hour at a time. Usually not longer than 30 minutes. Doctors say it's probably a combination of just being in the ICU and the side effects of some of the drugs they're giving him. We're going to try Melatonin tonight to see if we can help him sleep better. Nobody has said the word "home" yet, so we're not sure how much longer we'll be here. We're all more than a little sleep deprived and appreciate your prayers that God will sustain us and give us endurance.

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Approx 1:45 pm

They are putting in the new drainage tube and trying to get a PICC line right afterward. the procedure is bedside, but we cant be in there. Probably 45-hour before we can go back and see him.

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Approx 4:45 pm

Luke's new drainage tube is in. They also placed a PICC line for IV meds and blood draws and took out his Central Line (less risk for infection). Luke's already drained over 100cc of fluid from around his lungs, which should help him breathe better, feel better, sat better and require less oxygen. He has a hard time getting out from under the sedation drugs, but he's feeling better now. We're about to go on our second wagon ride of the day. 
Thank you for your continued prayers.

Tuesday

Felt very encouraged after rounds this morning. We just took out his pacemaker wires. We are turning down his Milranone (heart med) and it will go off at 4:00. Heparin came off last night. Oxygen flow down from 7 to 5 liters/min. Nitric is still off . Sats are staying pretty much in the 90%s. Heart rate and respiration rate are still a little high, but seem to be improving. Physical therapy came this morning and made him walk from his bed to the hallway and back. It touched my heart that Dr. Tia knelt in the hallway and cheered him on. Luke hated every second of his little walk, but once it was over and he was back in bed, his whole attitude is different. He's smiling some, talking more, and whining less. After a really difficult day yesterday (whining and crying constanly), we needed some wins today. Now if we could just get Luke to sleep for more than 45 min at a time, we would be well on our way back to normal. Thank you all for your prayers and love.

Monday

The sedatives we have been trying to help Luke sleep the last couple of nights have not been working. Luke is sleeping for 15 min- 1hour long stretches usually, with 1 1/2 hours being the longest we've seen him sleep since Wednesday. Mamma and Daddy are very tired too. Please pray that Luke can get some solid rest so that great healing can take place!

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Just heard a couple of new ones from Luke after his echo just now: "I want night night please." Then I few minutes later: "I want sleep please." Melt your heart. My poor sweet heart hero is so sleep deprived on top of everything else!

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Sleeping sideways in the bed. Nitric oxide is off! Nobody tell Luke. Heart rate and respiration rate are still high, but o2 sats are still high 80%s.

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From David:

Luke's heart-rate is climbing and his breathing is labored. Not really sure what that's about, but he just fell asleep, so hopefully he'll calm down and have a quiet night. His sats are good and his bp is good, so he may just need to get more fluid off of his heart. He's been a little bit more himself today and even drank some water and took a (1) step when we got him out of bed. We are still a ways from home, but maybe we're making progress.

Sunday

We had some scary moments last night--saw some screaming and crying and some o2 sats in the 30%s and a pretty blue baby. Luke wouldn't cough, so the RT finally had to suction him through his nose, which wasn't painful, but very scary to him and hard for mom to watch. Since then, his sats have been better (mid 70%s), but his heart rate is still elevated in the 140s. Thank you to all of you who were up praying for us last night and to those of you praying now. God is good all the time, and we definitely received his love and comfort. 

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Approx 3:30 pm
Luke is doing better this afternoon. He got his last chest drainage tube out this morning before I left. He is still requiring a lot of help to breathe: still on nitric oxide and 100% oxygen. His heart rate is still high at 130, but his o2 sats are better at 85-90%. David got him up out of bed for awhile holding him in the chair, and he even stood up for a minute. Dr. Kao thinks his lower sats are probably due to not getting enough blood to his pulmonary arteries because they are so small. We'll do an echo tomorrow to find out more. In the meantime, we thank you for your prayers that Luke's sats and heart rate will improve, and that infection stays far away from this room.

Post-Op Day 3/Saturday

Got to hold my brave baby boy.

Luke is doing fine today. We got one of his chest drainage tubes out this morning, which he got through with barely a flinch (so brave!). We're almost up to full, continuous feeds. We've gone down on diuretic. We had some trouble maintaining his o2 sats, but we were finally able to wean him of of the nitric oxide. He's still on 100% oxygen. Sats have been high 70%s most of the day. We got him out of bed and in my (ever decreasing) lap for about an hour. Tomorrow we will attempt helping him to walk around a bit. I know that he is going to hate that, so please pray that he will be brave and have minimal pain while we do this....and that we don't pull it any tubes by mistake!

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We're having some trouble tonight with Luke's o2 sats. Ranging from 60-75%. They put him back on the nitric, but it doesn't seem to be helping him much. I'm certainly not the doctor, but Low sats and a high heart rate (130s - 140s) make me suspect an infection might be brewing.